People who talk to me like I'm deaf or dim witted.

[Kelster]

People in healthcare and social services who have your diagnosis right in front of them but have failed to educate themselves about the symptoms. I have bulbar onset so I do speak slowly and with increasing difficulty, but give me a break! There are times my two year old grandson demonstrates more intelligence. I had a social worker, who immediately following my diagnosis, came to the conclusion that my exhusband was my legal guardian. Who's the slow one here?

 

[Atsugi]

So weird. You're right. Maybe hand people a card that says "Although my body is ill and I can't speak well, my brain is bright and I can hear and understand you perfectly. Wait patiently for my answers."

 

[KimT]

Many of us feel the same way. As I was compiling a document about ALS from PALS and CALS perspectives, many PALS mentioned this issue.

Right now, the thing that is so frustrating and exhausting is my having to explain the disease and how I got diagnosed to every new person I tell. I only told a hand full of people for six months after my diagnosis because I knew this would be coming. Take a look at one of the drafts of the document and you'll see a common thread of what you're saying.